I consider myself a conversation-starter. I like discussing serious topics and sharing my genuine feelings and thoughts with others. I enjoy talking about sports, engaging in light banter, and dissecting the plots of TV shows — even why “The Bachelor” or “The Bachelorette” made the wrong choice. I’m single, so perhaps my dating advice is unreliable right now. It’s nice to take my mind off the heavy stuff, particularly the subjects of my sister’s death, my health, my job, writing, and advocacy efforts. But I do like to bond with others over some of the deeper existential and philosophical aspects of life.
The topic of death comes up a lot in my writing. I’ve written a blog series about life and death and what “it” means. I’ve covered monthly and special milestones on my blog and in a previous column in the year since my sister, Alyssa, died. To some readers, this may seem morbid. At times, I’ll admit that I feel a little guilty focusing on these subjects, but I want to help those who are blissfully unaware to be more open about the reality of death. I don’t want them to be suddenly forced to deal with it when they could be somewhat prepared.
I see my role as a generator of those awkward conversations. My belief that humans should take stock of what they hold most dear is founded in compassion. Our society determines the value of others based on their productivity, economic value, and social capital. We live in an ableist society, where it is extremely difficult to flourish if you don’t fit a standard model. Our lives, no matter if we are chronically ill or “healthy,” can flip in a moment. A car crash, a cancer diagnosis, or a flu infection can immediately change our perspectives.
I encourage you to channel a time when you experienced a life-changing moment when you thought that life would never be the same. Use that memory to figure out what you hold dearest. I can recall two of my earliest moments like that: The first was when I was 12 and learned of the life expectancy associated with cystic fibrosis (CF); the second was when my grandfather died from mesothelioma when I was 16.
Since then, death, my legacy, the “meaning of life,” and all of those other existential questions pondered by poets and philosophers have been at the back of my mind. The common thread running through my head is that I want to maximize my time on this ethereal plane. As I grow older and become more involved with the world, I realize that our contribution is not the only part of our legacy. Our lives must be filled with what we consider to be important. For instance, compassion is an essential life resource for me, and the most beautiful thing about compassion is that it is limitless.
My sister died one year ago. I miss her dearly. Not a day goes by that I don’t think about her. Her health was always more fragile than mine. Her life, while filled with suffering, was also replete with meaning. The people she encountered recognized that her soul, while scarred like her body, was brimming with love and zest for life.
I have not been shy about my emotions or thoughts about her death. I’ve chosen to use the phrase “my sister died” when trying to emphasize the depth of my grief. In gentler moments, I use the term “passed away.” We shouldn’t shy away from death — whether you view it as life’s natural ending or a malevolent force, it is an inevitable outcome for all of us.
CF gives us a license to consider death more deeply. We become experts on our own mortality from a young age. In that way, CF bestows perverse wisdom upon us mutants. My sister was transparent about her health, but she chose to avoid talking about her imminent death. I’ll admit I sometimes wondered if that was a sign of weakness. Since she’s passed away, I have a new perspective on her reluctance to focus on her mortality. I see it now as a sign of her courage and sacrifice. She knew that we would have to deal with her death at some future point, so she avoided burdening us with the conversation while she was still alive.
The day will come when we all cease to exist. It’s up to us, then, to live a life in which we’re OK — or as OK as we can be — with its ending.
Follow along with Tré’s other writings on his humbly named site, www.trelarosa.com.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.